Einstein Syndrome

Einstein Syndrome

by Miriam Kauk

Imagine that you have just given birth. You notice a sense of excitement in the room. Finally, the doctor comes to you with a big smile and says, “I have some important news to give you. Based on our preliminary examination, we believe your baby has Einstein syndrome!”

The doctor goes on to tell you that children with ES typically read by age three, and by six or seven read at a high school level. They can master many languages during their preschool years, develop phenomenal vocabularies, and complete high school by age ten or eleven and college by fifteen. Furthermore, children with ES have remarkable physical skills. Many Olympians have ES. And they tend to be excellent musicians.

Now, how are you going to treat this child? It is doubtful that you are going to leave him in his crib for the first two months, watching a mobile.

Instead, you will keep your child in a room full of activity. You will talk to him, naming items, and expecting him to begin to understand you. You will surround him with classical music. You will read to him as much as you can and begin teaching him alphabet letter sounds very early.

This child will go with you everywhere, just so you can teach him more about the world. He won’t be in a playpen; you will be giving him lots of opportunities to learn to crawl, and you will expect him to go get things himself. You will probably hire a nanny who speaks another language, and will likely enroll him in gymnastics or swimming classes.

Guess what? Even if the diagnosis was wrong, by the time your child is five or six, people will begin commenting on how incredibly bright he is. He will be an excellent reader, have a tremendous vocabulary, have a good ear for music, and be exceptionally coordinated, all because of the extra input that you have given him based on your expectations.

Contrast this with another scenario, this one all too real. After giving birth, there is stillness in the delivery room. The nurses seem to avoid you. Finally, maybe several hours later, the doctor tells you what is wrong. “Your baby has Down syndrome. Try not to let it ruin your life.”

As you read more about Down syndrome, this dreary prognosis emerges: Your newborn baby is retarded. He will learn to crawl and walk late. His language skills will always be minimal, and he will never be able to express himself well. This child might learn to read a little, but certainly not by the age that normal children do, and never well. Even as an adult, he will always do stupid things because he will never learn to think well.

With that dreary prognosis, how are you going to treat your baby? Why bother talking to him? He won’t understand you anyway. Why bother reading to him? He’ll never learn. Why bother even getting him out of his crib? He isn’t supposed to crawl for many months. And guess what? He doesn’t learn to walk, read, talk, or think well, just like they all said.

I am convinced that the biggest handicap Down syndrome children have is the low expectations of their parents.

This baby may have physical problems. Maybe he doesn’t hear well. Maybe he has poor muscle tone or a heart defect that leaves him weak and causes difficulty with new physical skills. This little baby needs lots of extra sensory input just to balance his physical handicaps.

As a baby, my daughter, Mary would have been content to lie on the floor for hours sucking her thumb. As a toddler, she hardly demanded any attention. With five other children, I had plenty to do and easily could have ignored her. But Mary needs more input, not less. I needed to make a constant effort to interact with her and involve her in what the family does. As a result of all that extensive input, by the time Mary was three, she wasn’t in the least passive, but was on the go non-stop.

I have been accused by a social worker of not dealing realistically with Mary’s condition, of being in “denial.” Yup, I’m in denial. But as long as I believe that she is capable of normal function, I will be willing to give her the input she needs to get there.

This article was first published in the Teaching Home magazine in July/Aug 1994.
Copyright 1994-2011 Miriam Kauk

28 Responses to Einstein Syndrome

  1. Lisa says:

    Sorry, but Einstein Syndrome is not down syndrome with a positive attitude, its completely different. These are kids that are just delayed and have a different way at looking at the world. My son is like this. He’d rather but a train track together than play outside. Right now he’s advanced in school about a year ahead, but behind in communication. And, I didn’t do anything to increase his analytical skills at all, in fact most of the time I just let him watch tv, but he had a much better memory that the average child.

    I know its best to maintain a positive attitude and all, but I’m just letting you know that most parents with einstein kids don’t put the extra effort you are talking about, its just natural for them to be advanced in the analytical areas, and not so advanced in speech until later on.

    Sure its great to be positive, but its best to recognize diagnosis and conditions for what they are.

  2. Miriam says:

    Hi Lisa,
    There are two usages of the term “Einstein Syndrome” that I am aware of. I coined this term to describe this hypothetical “genius syndrome” in order to make a point of the effect of parental expectations on a child’s development. The article “Einstein Syndrome” above using that meaning was first published in 1994. There is more of my use of the term here: http://einsteinsyndrome.wordpress.com/about/.

    Then in 2001, Sowell wrote a book of the same title with an entirely different meaning. Sowell is referring literally to Albert Einstein, a genius who was a late talker. If you are aware of a medical use of this term prior to 1994, I’d be quite interested in a reference.

  3. Michelle says:

    I just wanted to commend you on this article. My daughter was born with Down Syndrome. We had hundreds of people saying how “slow” she would be and that she probably wouldn’t do half the things a child without Downs could do. I’ve NEVER treated her any differently than my other children. She is and always has been a child in my eyes. I’ve always thought if you treat a child as though they cannot succeed and learn then how will they ever have the motivation to do so? My daughter still impresses me and people around her every day.

  4. nat says:

    Hi, My son has Downs….Funny how life COULD have been. My son, Thomas is a fantastic, whirlwind of non-stop fun and love….He goes to special school, and has learned so much…………He has just turned 9 and to me he has come so far in his short life…….He has 3 siblings who he interacts with…..He has just mastered the art of toilet training(AT LAST!!!!) To me he is EINSTEIN in disguise…Ask him anything and he knows what you want of him……He never talks……..but loves to show and impress us on a daily basis…..We love Thomas so much, and at times it can be stressful………The only thing that scares me is that one day I wont be around anymore to watch over him….I believe Thomas was sent to our family as a gift……So it’s FUNNY how life is and how looking back after 9 years it really is not as bad as what I thought…INFACT IT’s BETTER……..Thomas we love you!!!!

  5. Dawn Mogyoros says:

    Miriam,

    ok first…LOVE this article! I can relate to to what you wrote..”I am convinced that the biggest handicap Down syndrome children have is the low expectations of their parents” How true!
    Now 2nd… My son has Down syndrome, he was a micro preemie, he has global delays. He is 5 years old and the joy of my life, despite all the hard work raising him alone, this is something a parent does, should do. Parenting a child with Ds isn’t so different.
    It’s different in that the parent needs to devote more time and effort and patience to be sure the child receives all the needed services to succeed, but it starts at home. OT, PT, ST, etc. all the T’s…do help, but the bottom line is the parent’s ability to cope with the fact that this beautiful child requires alot. But the rewards are returned tenfold. I’ve been proactive since my son’s birth…whatever it takes I’ll do it. If my son doesn’t read till he’s 10 or even never, that’s ok, at least I know I gave him the *best* chance possible. I went to a developmental specialist (doctor) at a well known hospital, the words she spoke were shocking and offensive. No sooner than I sat down with my 200 questionare filled out about my son, she said to me…your son has Mental Retardation…
    Oh really? I said (like what kind of fool did she take me for?) She said that I needed to face “reality”. She said that I was setting my expectations too high. All in a small room in a matter of minutes. I had made this appt. to seek advice on oral motor stimming my son does. She instead insulted my intelligence, shot down all my efforts by saying “I set my expectation too high”. I asked her what gave her this idea…she couldn’t answer me. Now for the shocker…with all of the school and therapist reports I brought in to this appt. including my questionare had listed my son’s diagnosis “DS”. This doctor replied after I mention the word Ds…she said “OH? He has DS?
    end of story. I have yet to report this doctor but it just proves the ignorance that is in the minds of the medical community.
    Times are better in our day and age for our kids with Ds, but there are still those living in the dark ages.
    I think your article is so great that I copied it to send to my parent friends w/ Ds kids. Thankyou for this.

  6. GRI BUONGIORNE says:

    Miriam, I just found this…what an increadibly positive outlook you have. This is an inspiration to all of us who have been touched with DS in our families. Reading this and then seeing your Mary blossom into the lovely accomplished young woman she is today is just awesome and a testimony to the love of God and that with Him indeed all things are possible…to those who BELIEVE.
    Thanks again…

  7. Pingback: My Work Is Done; I Can Just Retire Now « Einstein Syndrome: Down Syndrome with a Positive Attitude

  8. Laura says:

    I so agree! One of the first things my pediatrician and I talked about was expectations. He said the same thing – that many parents of children with DS would be surprised at what their children CAN learn to do. They just don’t expect it of them and their children learn to live up to (or down to) their expectations.
    SO we purposed from the start to expect that she would and could do everything. It might take her longer to master it, but that’s OK.
    Now 2 yrs later, she is doing fantastic! Almost “normal” with her PT skills and just discharged from OT because she has caught up!
    She IS far behind “typical” in speech, but THAT’S OK!
    We’ll keep working. It will come – eventually.

    Thanks for your positive article.

  9. Rickismom says:

    Look, Einstein she isn’t. But when a socvial worker thinks I don’t “accept” the reality of her retardation, just because Of my high expectations, I can go balistic. I answer back:’Look, I have to deal with this for the rest of my life. BELIEVE me I know what her reality is.”

    But don’t limit your expectations. Dream . Push> But with love and acceptance.
    (Ricki is 14)

  10. Katy says:

    I say kudos to the writer of this article and to all the parents who have children with Down’s syndrome. I do not have a child with Downs; I am a medical student interested in working with Down’s patients. Ignore the negativity–this is YOUR child, a child you love. Every child will be faced with problems and set-backs, we just cannot always predict what these will be. And I don’t believe that it can be predicted with children with Down’s either. It is good to know the warnings and things to look out for but this should NOT rule you or your child’s life! Medical science doesn’t know everything–it is amazing the things we still do not know or understand. I think if you come across people with such negativity toward your child you should avoid them if at all possible–whether it be doctors, social workers or friends and family. There is a difference between being “realistic” and being negative to a point that it depresses and demotivates others. Be positive–you will never regret the love you and your child share.

  11. Pingback: Sindrome de Einstein « Einstein Syndrome: Down Syndrome with a Positive Attitude

  12. sinead says:

    hi i am a parent of a child with ds and like that everytime i take her for check ups i get told oh yeah well that comes with downs no matter what i bring her for its all put down to “what it says in the book” well guess what every child is an individual regardless of down syndrome or not and no child develops or reaches their milestones at the same pace of another child! the way i see it is they were giving a little extra so they need a little extra. They may not sit,talk,crawl or walk at the same rate but they will eventually do it, all they need is a little more time and patience. i was recently giving a book for a present. It was written by a dutch author the title is ” The upside of down” the title is so ironic but brilliant and it shows that their is an upside and its not all bad and every child in the book is different, its an amazing book and a quote made from a mother with a child that has ds said “if every family had one of these children they would be a better family, and really i think every family should have one”

  13. jackie says:

    My son Christopher has DS. He’s just had his second birthday party and it was brilliant. We’re living in Catalunya (Spain) and he was born here although we’re from the UK. He started nursery last summer, not to get rid of him but to help him to learn to interact with others. Now he’s adored by all of his peers. He has to kiss everybody and we’re so proud of him. He’s my reason for getting out of bed every day and putting up with the crap that life throws at you.

    I think that if I never saw another child of Christophers age I would still be in denile about him having DS. He’s funny and clever and annoying and beautiful, full of energy, obsessed with books and music and won’t stop hiding the sky viewing card whenever dad leaves the room!

    It’s when I compare him to his classmates that the difference becomes obvious. They have all been walking for the last year whereas Christopher has only just mastered it and I don’t think he’ll be toilet training anytime soon.

    We have been positive with him since the beginning, choosing to believe he is capable of anything with help from us all although we keep in mind that its going to be a steeper hill to climb.

    He’s asleep on the sofa as I type this with pneumonia. He’s fighting it off but at the end of the day he’s not as strong as we’d wish him to be.

    DS throws up hurdles along the way in his otherwise happy and full-filled life.

  14. Maggie says:

    Brilliantly said! I have 2 children with Down syndrome and we are using your Einstein method of schooling/teaching. Our 4-year-old identical twin sons can do every thing any other child can do… often on/or nearly on time as well. Our expectations are that they will exceed all expectations. And, so far, they have… not only for us, their parents and friends but for absolutely every one who meets them. Yes, I spend a bit more time working with them but no more so than I’ve spent on math with my 7-year-old daughter who has recently, suddenly mastered that subject!

    Thanks for putting it so eloquently!

  15. Casey says:

    As a new parent of a child with Down Syndrome I look forward to the challenges ahead. I feel sorry for those like Lisa. They seem to have a negative attitude about their child. My wife and I found our at 11 weeks that our child would have a genetic disorder. Even though the medical society proposed abortion to deal with our “unfortunate” situation we embrace our new life with open arms. Parents with positive attitudes will raise children with positive attitudes. And most of all they will have a chance to survive. A child with Down Syndrome is a blessing. Nothing more nothing said, a true blessing. I wish you the best Lisa.

  16. Miriam, thank you for stopping by my blog so I could then find your blog…..I could spend all weekend here, what an amazing and resourceful site you have put together! Thank you, thank you!!!! You have posted about so many things that are dear to me, or that i have been meaning to research…..and it is all here!!!!!! I will be back again, and again, and again…… :)

    Cheri (Long Beach, CA)

  17. Pingback: 8. Don’t Wait for “Their Own Time.” « Einstein Syndrome: Down Syndrome with a Positive Attitude

  18. Lou says:

    I have an 8month old son who has ds and this article sums up how i hope i am going to continue bringing him up, exactly the same as his 2 sisters. He interacts brilliantly with them already down to vocalising his annoyance if they get bananas before him!

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  20. Carrie says:

    I have a 7 year old daughter with downs syndrome. She is my sweetie pie, I love her unconditionally. We have had struggles with her school, they don’t have the same viewpoint I have. I believe she needs to be challenged, even a “normal kid” won’t advance if they are not challenged to. They are STILL teaching her colors, shapes, and counting, and she has been able to do that for YEARS! I have always been active in working with her at home, I never say she can’t do that, or she’s never going to do that, I am the one that says STOP TEACHING HER SIGN LANGUAGE she is not deaf, she can speak, but she needs help pronouncing her words…things like that. I feel bad because despite my best efforts she is behind, and I feel she could be doing so much more than she is now. I just don’t know EVERYTHING there is to know about HOW to help her develop more. I am always proud of her, even when she is not able to do something despite her best efforts, I always praise her and hug her and tell her how happy I am. She get frustrated A LOT and I always try to reassure her that it is o.k. that she can’t always do things she wants to do, like draw a girl, or write her name. well, I just saw this website and immediately fell in love, and wanted to share!

  21. MAgdalena Vázquez says:

    Miriam,

    Thank you for this article, it made my day when I read it. I beleive a positive attitude makes a great difference in bringing up a child with Down Syndrome. I have a 10 month baby his name is Ismael, I didn´t want a prenatal test because I don´t beleive in abortion and even though he was a surprise for me it was better this way. I´m learning on how to bring him up and how to take care of him. Your page has been a great resource for me. I live in Mexico in the city of Queretaro, Ismael goes to school (early intervention)since he was 40 days old and he´s getting physical teraphy, I don´t see a great difference between him and his siblings, I have a 15 year old son and a 13 year old daughter, maybe Ismael is a little slower, but I have this feeling that he understands perfectly what we say and how we feel about him ;a strange but beatiful feeling. I truly beleive he has a very special spirit. Every day I´m learning and every day I’m proud of him and our family. Well thanks for making this page available for us, where we can share with other families with children with DS, I´m very far away but I feel close to all of you!

    [I'm so glad this article was a good resource for you. As you work with Ismael, and as you help him to grow and learn, please keep in mind what I wrote in this post Don't Wait for Their Own Time. The two articles go hand in hand. -Miriam ]

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  23. Romy says:

    My beautiful baby brother will turn 30 next Saturday! I remember my parents bringing him home from the hospital worried, stressed and without the joy I’d been expecting a new baby to bring. But his unlimited ability to love and laugh brightened up my parents fears. Everyone is so proud of our handsome, polite and friendly young man. He reads, works, is a fabulous ballroom dancer, swimmer and always wanting to help others. A few years ago he surprised us all by getting himself a girlfriend, asking out a young lady whose parents my parents had met at a support group for families with Down Syndrome children. He phoned her and asked her to a movie and restaurant without making much of a fuss about it at all. a few weeks later they were holding hands and proclaiming they would be together forever! It’s so nice to see him have a companion and look towards building his own future. His girlfriend is a very capable young lady whose parents fought hard to have her taught in the mainstream school system where she learnt to read and write and she did so well she even has her drivers licence and is a very capable and careful driver. My parents regret they did not push my brothers teachers more but a few years ago they got him a tutor and within months he had learnt letters and was on his way to reading fluently.
    People with DS are very special. They are full of love and they are wise and smart. Don’t underestimate them. Sure, some things are hard for them, but there is so, so much they can do if they are loved.

  24. Dagny says:

    This is so true. My sis Nora has DS and she was walking when she was two, and can easily do things that most kids can do. Sure, she was slowed down a bit by her DS but that isn’t really important. I mean….having an extra chromosome isn’t the end of the world!! My mom treated Nora just like any of the other kids and with us, she had us playing the violin/viola when we were three or four. Nora is doing the piano. We are pushing her to learn her letters. Plus, she does sign language fluently and is learning words quickly.
    And she’s only three. In my opinion, this is only the beginning.

  25. Diane says:

    I am so glad I stumbled onto this website! I have a bright little girl who is now 19 months old. She has DS which accounts for her brilliant smile that lights up the room. I found out when I was 20 weeks pregnant and also was cautioned about how hard it would be but she was my child and I wanted her. Her father did decide that he couldn’t/wouldn’t handle it.

    She is doing so well but I am a pushy mom! She is my 3rd child and I expect her to meet the same milestones as the first 2 if possible. She is almost walking but has leukemia and that is affecting her strength. But this week, she decided to be potty trained and is doing extremely well at it. Everytime someone compares her to her “expections due to DS” they are very surprised but how “normal” she is.

    It is so great to know other people are able to see them as more than sweet loving people. She is just as smart as she is funny!

  26. Rochelle Wilson says:

    I love all the comments! We have four wonderful daughters, ages 8 – 17. The youngest has DS, and we LOVE her to death! I have home-schooled for the past nine yrs., and I will continue to teach our Sarah at home, unless God intervenes. Sarah has brought so much joy to our family and friends…she really is a glory to God! We have always treated her like the other girls, with a few exceptions, and she has always amazed us with her thinking skills. Of course, we teach her according to her cognitive skills; she is eight, but is learning at a 5-6 yr old level. She was climbing our play structure at age two, and has always kept us on our toes! If anyone reads this comment, please know that your child is more capable than society would lead you to believe…just give them a chance! :)

  27. My unborn daughter (my first child too!) has been diagnosed with DS. After the initial ‘shock’ I viewed this very negatively and had many thoughts running through my head – will she be ‘deformed’, will she be ‘retarded’, will she live past 40, will she spend her life tarnished by social stigma? I was lucky in that I received some extremely positive advice from Dr Pierce at Leeds General Infirmary. She explained that whatever this little kid needed that help would be there and that the type of adult she would grow to become was mostly down to us as parents. Of course it will be challenging, but it’s certainly not impossible that my daughter will lead a happy, independent and fulfilling life. I won’t be forcing her to be something that she isn’t, but I’ll be guiding her to achieve each of her goals, realise her ambitions and give her the opportunity to be a responsible member of society. That is what any parent should do. I refuse to ‘give up’, and from the scans I’ve seen…so does she. Little Starling. x

    [What an awesome doctor, and absolutely right! Take a look at this video that I just saw today: http://www.youtube.com/watch?v=rnT-tKp7JMg So much does depend on the parents and the choices you make. You have already made the first correct choice, Embrace Your Calling. - Miriam ]

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